Infective dermatitis associated with human T-cell lymphotropic virus type-1, an underdiagnosed disease.

Infective dermatitis associated with human T-cell lymphotropic virus type-1 (HTLV-1) (IDH) is a severe form of chronically infected eczema occurring in early childhood, although very rarely cases have been reported in adults. Most of the cases are from Jamaica and Brazil and occur in individuals with low socioeconomic status. IDH is always associated with refractory Staphylococcus aureus or beta-hemolytic Streptococcus infection of the skin and nasal vestibules. Patients with IDH may develop other even more severe HTLV-1-associated diseases, such as HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP) of early or late appearance and adult T-cell leukemia/lymphoma. In the context of the Brazilian experience, it has been observed that 54% of IDH patients exhibit the juvenile form of HAM/TSP while the estimated incidence of adult HAM/TSP is 3%. As there are no curative treatments for HTLV-1 infection (or vaccines) or most of its associated diseases, prevention of infection is fundamental, mainly by vertical transmission, as it is responsible for the development of IDH, infantojuvenile HAM/TSP, and ATL. Public measures to reduce this transmission must be implemented urgently. Furthermore, it is recommended, mainly in HTLV-1 endemic areas, to search for HTLV-1 infection in all patients with infected eczema, even in adults.

Neurological aspects of HTLV-1 infection: symptoms in apparently asymptomatic carriers.

Human T-lymphotropic virus type 1 (HTLV-1) is classically associated with the HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP), although the mechanisms of this neurological disorder remain unclear. In addition, some patients who develop "minor" neurological signs that do not meet diagnostic criteria for HAM/TSP are classified as asymptomatic carriers. This study aims to demonstrate the neurological symptoms of Brazilian patients living with HTLV-1 classified as not-HAM.TSP. This observational study evaluated patients treated in an HTLV reference center in Bahia, Brazil, between February 2022 and July 2023. The data were obtained through the analysis of medical records and neurological consultation. Those individuals classified as HAM/ TSP were excluded from this study. 74 patients were submitted to a careful neurological evaluation: 23 HAM/TSP, 22 were classified with intermediate syndrome (IS), and 29 were oligosymptomatic. Self-reported symptoms were significantly more common in the IS group, including urinary symptoms such as nocturia, urgency, incontinence, dysuria, weakness, paresthesia, lumbar pain, xerostomia, and xerophthalmia. Physical examination findings consistent with reduced vibratory and tactile sensitivity were more common in the IS group (p = 0.017 and p = 0.013). Alterations in the V and VIII cranial nerves were present in both groups. HTLV-1 can lead to the development of important neurological signs and symptoms in apparently asymptomatic individuals. This data highlights the need for more research into the neurological aspects of HTLV-1 infection and emphasizes the importance of early diagnosis, treatment, and support for individuals living with this virus.

Signs and symptoms of human T-lymphotropic virus 1 and 2 infections in paediatric patients.

OBJECTIVE: To determine the prevalence of signs and symptoms of HTLV-1 and 2 infection in paediatric patients. METHODS: We included cohort, case-control and descriptive observational studies that reported the prevalence of signs and symptoms of HTLV-1 and 2 infections in paediatric patients. Searches were performed in MEDLINE® (Ovid), EMBASE and LILACS from inception to the present, and we saturated information with other sources of published and unpublished literature. We decided not to perform meta-analysis according to heterogeneity. RESULTS: A total of eight studies met the inclusion criteria for qualitative analysis. No studies of HTLV-2 were found. Females predominated and there was vertical transmission in nearly 100% of cases. Infective dermatitis was a common manifestation of HTLV in paediatric patients. In addition, persistent hyperreflexia, clonus and the Babinski sign were early neurological alterations observed in patients carrying the virus. CONCLUSION: HTLV screening is recommended in patients presenting infective dermatitis, persistent hyperreflexia, walking disturbances and in those who come from endemic zones.

Distribución geográfica y tipo de infección del virus linfotrópico T humano en pacientes peruanos 2019-2021 / Geographic distribution and type of human T-lymphotropic virus (HTLV) infection in Peruvian patients 2019-2021

En el presente estudio describimos y caracterizamos la distribución geográfica de los casos positivos confirmados a HTLV-1 y 2 de pacientes peruanos con diagnóstico presuntivo entre 2019 y 2021. De un total de 555 muestras positivas confirmadas, 546 (98,4%) fueron HTLV-1 y 9 (1,6%) HTLV-2. Además, 22 de 24 departamentos del Perú presentaron casos de HTLV-1, siendo los principales motivos de solicitud de confirmación diagnóstica: aspirante a donar sangre con prueba de tamizaje reactivo, sospecha de leucemia/linfoma y paraparesia espástica tropical. Los resultados reflejan que la identificación de los puntos críticos constituye una brecha persistente respecto al diagnóstico, siendo cruciales para reducir el número de nuevos casos en Perú.

In the present study we describe and characterize the geographic distribution of HTLV-1 and 2 positive cases from Peruvian patients with presumptive diagnosis 2019 - 2021. Of a total of 555 confirmed positive samples, 546 (98.4%) were HTLV-1 and 9 (1.6%) HTLV-2. In addition, 22 of 24 departments of Peru presented cases of HTLV-1. The main reasons for requesting a confirmatory diagnosis being: aspiring to donate blood with a reactive screening test, suspicion of leukemia/ lymphoma and tropical spastic paraparesis. The results reflect that the identification of critical points constitutes a persistent gap regarding the diagnosis, being crucial to reduce the number of new cases in Peru.

Impaired flexibility in patients with tropical spastic paraparesis/HTLV-associated myelopathy: evaluation via pendulum fleximeter / Flexibilidade prejudicada em pacientes com paraparesia espástica tropical/mielopatia associada ao HTLV: avaliação via flexímetro pendular

Abstract Background Flexibility is crucial to the harmonious execution of joint movements. While skeletal muscle dysfunction in patients with HTLV-1 can interfere with mobility, it is unclear whether these patients experience reduced flexibility. Objective To evaluate the differences in flexibility between HTLV-1-infected individuals with and without myelopathy compared with uninfected controls. We also investigated whether age, sex, body mass index (BMI), physical activity level, or lower back pain influence flexibility in HTLV-1-infected individuals. Methods The sample consisted of 56 adults, of which 15 did not have HTLV-1, 15 had HTLV-1 without myelopathy, and 26 had TSP/HAM. Their flexibility was assessed using the sit-and-reach test and a pendulum fleximeter. Results No differences in flexibility were observed between the groups with and without myelopathy and controls without HTLV-1 infection using the sit-and-reach test. The pendulum fleximeter results of individuals with TSP/HAM presented the lowest flexibility among the groups with respect to trunk flexion, hip flexion and extension, knee flexion, and ankle dorsiflexion, even after adjusting for age, sex, BMI, level of physical activity, and lower back pain using multiple linear regression models. Additionally, HTLV-1-infected individuals without myelopathy demonstrated reduced flexibility in movements: knee flexion, dorsiflexion, and ankle plantar flexion. Conclusions Individuals with TSP/HAM demonstrated reduced flexibility in most of the movements evaluated by the pendulum fleximeter. Additionally, HTLV-1-infected individuals without myelopathy demonstrated reduced knee and ankle flexibility, potentially representing a marker of myelopathic development.

Resumo Antecedentes A flexibilidade é fundamental para a execução harmoniosa dos movimentos articulares. Embora a disfunção do músculo esquelético em pacientes com HTLV-1 possa interferir na mobilidade, não está claro se esses pacientes apresentam flexibilidade reduzida. Objetivo Avaliar as diferenças de flexibilidade entre os indivíduos infectados com e sem mielopatia e o grupo controle sem infecção HTLV-1. Também investigamos se idade, sexo, índice de massa corporal (IMC), nível de atividade física ou dor lombar influenciam a flexibilidade em indivíduos infectados pelo HTLV-1. Métodos A amostra foi composta por 56 adultos, dos quais 15 não possuíam HTLV-1, 15 possuíam HTLV-1 sem mielopatia e 26 possuíam TSP/HAM. A flexibilidade foi avaliada por meio do teste de sentar e alcançar e do flexímetro de pêndulo. Resultados Não foram observadas diferenças na flexibilidade entre os grupos com e sem mielopatia no teste de sentar e alcançar. Os resultados do flexímetro pendular dos indivíduos com TSP/HAM apresentaram a menor flexibilidade entre os grupos em relação à flexão do tronco, flexão e extensão do quadril, flexão do joelho e dorsiflexão do tornozelo, mesmo após ajuste para idade, sexo, IMC, nível de atividade física e dor lombar usando modelos de regressão múltipla linear. Além disso, os indivíduos infectados pelo HTLV-1 sem mielopatia demonstraram redução da flexibilidade nos movimentos de flexão do joelho, dorsiflexão e flexão plantar do tornozelo. Conclusão Indivíduos com TSP/HAM demonstraram redução da flexibilidade na maioria dos movimentos avaliados pelo flexímetro pendular. Além disso, indivíduos infectados pelo HTLV-1 sem mielopatia demonstraram redução da flexibilidade do joelho e tornozelo, representando potencialmente um marcador de desenvolvimento mielopático.

Comparison of Static Balance Control in Infected Htlv-1 Subjects with Different Tsp/Ham Diagnosis.

(1) Background: Tropical spastic paraparesis (TSP/HAM) associated with the T cell lymphotropic virus in type I humans (HTLV-1) is a slow, chronic, and progressive disease that causes balance changes. TSP/HAM diagnosis can be classified as probable, possible, and definite. We compared the static balance control of HTLV-1-infected patients with different TSP/HAM diagnosis. (2) Methods: Our sample consisted of 13 participants infected with HTLV-1 and 16 healthy participants. The center of pressure was recorded using a force platform with open and closed eyes. We divided the recordings into three intervals, period T1 (corresponds to the first 10 s); period T2 (from 10 to 45 s); period T3 (from 45 to 55 s). (3) Results: Eight participants infected with HTLV-1 were classified as probable TSP/HAM and five participants infected with HTLV-1 were classified as definite TSP/HAM. There was a significant increase in postural instability in patients with definite PET/MAH considering the structural and global variables of body sway compared to the control and the probable TSP/HAM. (4) Conclusions: We concluded that the severity of balance is directly related to the degree of signs and symptoms of TSP/HAM.

Human T Lymphotropic Virus 1-Associated Myelopathy: Overview of Human T Cell Lymphotropic Virus-1/2 Tests and Potential Biomarkers.

Human T cell lymphotropic virus (HTLV)-1-associated myelopathy is a chronic, disabling inflammatory disorder of the spinal cord caused by HTLV-1 infection. The diagnosis of HTLV-1-associated myelopathy (HAM) is based on clinical and laboratorial findings. The disease is characterized by the presence of spastic paraparesis associated with detection of anti-HTLV-1 antibodies or HTLV-1 genomes in blood and cerebrospinal fluid (CSF). New inflammatory markers have been proposed for the diagnosis and assessment of the prognosis of HAM. We reviewed the laboratory diagnostic and potential surrogate markers for HAM. The serological screening tests for detection of anti-HTLV-1/2 antibodies are highly sensitive and specific, but confirmation and typing of HTLV-1 or HTLV-2 infection by other serological or molecular methods are essential. Detection of intrathecal anti-HTLV-1 antibodies and quantification of the HTLV-1 provirus in CSF provide additional evidence for diagnosis especially in atypical cases or where alternative causes of neuroinflammation cannot be excluded. The CXC motif chemokine ligand 10 and neopterin in serum and CSF are now emerging as inflammatory markers with prognostic value and for HAM monitoring and management. In addition, measures of neurodegeneration, such as neurofilament light chain in the CSF and blood, may also contribute to the HAM prognosis. This review is useful for clinicians and researchers evaluating potential benefits and limitations of each biomarker in clinical practice. The advent of new markers makes it necessary to update the criteria for the best evidence-based approach and for worldwide consensus regarding the use of diagnostic and surrogate markers for HAM.

Cardiovascular risk factors and brain white matter lesions in HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP).

The origin of brain white matter lesion found in HTLV-1-associated myelopathy (HAM/TSP) remains undefined. We investigated the association between white matter lesions in HAM/TSP with cardiovascular risk factors. The group of 40 patients with HAM/TSP included 60% females and mean age of 58.6 ± 8 years old. The probability of 10-year cardiovascular disease was low in 53%, moderate in 38%, and high in 10% of the patients. There was no difference between the cardiovascular risk factors in HAM/TSP patients with and without brain lesions (p > 0.05). Our data suggest that the brain white matter abnormalities are not associated to increased cardiovascular risk in HAM/TSP.

Cerebral and spinal cord changes observed through magnetic resonance imaging in patients with HTLV-1-associated myelopathy/tropical spastic paraparesis: a systematic review.

To verify brain and spinal changes using magnetic resonance imaging in patients with HTLV-1-associated myelopathy/tropical spastic paraparesis. This was a systematic review. The descriptors used were tropical spastic paraparesis and magnetic resonance image. The keyword HTLV-1-associated myelopathy was also used. Twenty-three articles were included: 16 detected brain changes and 18 detected spinal changes. White matter lesions were the most frequent finding in the brain. Brain injuries were most frequently identified in the periventricular region, in the subcortical region, in the centrum semiovale, in the brain stem, and corpus callosum. Atrophy was the most frequent finding of the spinal cord, affecting the thoracic and cervical regions, and was associated with a longer evolution of myelopathy. White matter lesions in these regions were also observed. Cortical white matter lesions and thoracic spinal cord atrophy were the most frequently reported changes in patients with HTLV-1-associated myelopathy.

Spirituality as Strategies for Coping With Tropical Spastic Paraparesis: Results of Focus Group.

In the logic of integrality in health, one of the aspects less addressed by assistance services is the question of spirituality. This study utilized qualitative analysis from focus groups to identify whether spirituality can contribute to coping with problems arising from the HTLV-1 myelopathy associated or tropical spastic paraparesis (HAM/TSP). The testimonies were recorded and then transcribed. The information was then systematized by the analysis of thematic-categorical content. When giving voice to people who suffer from HAM/TSP, there is clear evidence that spirituality, understood broadly and not restricted to institutionalized religious practices, is expressed in narratives of feeling for others and trust in God. Through spiritual solutions, people with HAM/TSP find the strength to face their disability and pain.

Association between high proviral load, cognitive impairment, and white matter brain lesions in HTLV-1-infected individuals.

The association between high proviral load (PVL) in peripheral blood mononuclear cells (PBMC), cognitive disturbance and white matter brain lesions in HTLV-1-infected individuals is still undefined. A cross-sectional study included 62 participants: 22 asymptomatic carriers (mean age 43.4 ± 13.1 years old), 22 patients with HTLV-1-associated myelopathy (HAM/TSP) (mean age 51.5 ± 8.7 years old), and 18 uninfected controls (mean age 52.3 ± 11.1 years old). All individuals fulfilled the following criteria: between 18 and 65 years of age, more than 4 years of formal education, and completed neuropsychological evaluation and HTLV-1 serology. Infected individuals underwent brain conventional magnetic resonance imaging and PVL quantitative PCR (qPCR). Statistical analysis was adjusted in the models by age and education. Cognitive deficit was observed in all groups. Patients with HAM/TSP showed higher neurocognitive deviation in attention and motor skills, higher frequency (84%) of brain white matter lesions, and higher PVL median (range) 8.45 (0.5-71.4) copies/100 PBMC. Brain white matter lesion was associated with verbal memory deficit in HTLV-1-infected individuals (HAM/TSP and asymptomatic carriers) (p = 0.026). In addition, there was a correlation between higher PVL and neurocognitive dysfunction score (processing speed of visuomotor information and visuoconstructive praxis) in HTLV-1-infected patients. The study demonstrates an association between HTLV-1 infection, neurocognitive disorder, and white matter brain lesions on MRI as well as a correlation with higher HTLV-1 PVL, suggesting that the central nervous system involvement by HTLV-1 is not restricted to the spinal cord but involves the whole neuro-axis. HTLV-1-infected individuals should be tested for cognitive impairment.

Intrinsic and Extrinsic Cell Apoptotic Pathways in Patients with HTLV-1-Associated Myelopathy/Tropical Spastic Paraparesis: A Systematic Review.

We aimed to verify the influence of intrinsic and extrinsic cell apoptotic pathways on the inhibition of cellular apoptosis in patients with tropical spastic paralysis/myelopathy related to human T cell lymphotropic virus type 1. The databases accessed were PubMed, Scopus, Science Direct, and Web of Science. Neither the time of publishing nor the language of the articles was limited. The descriptors used for this systematic literature review were: Tropical Paraparesis, Proto-Oncogenic Protein C, Bcl-2, Bcl-X Protein, Bax protein, Fas ligand (FasL) protein, Fas receptor, TNF-related apoptosis-inducing ligand and Fas-associated protein with death domain (FADD)-like apoptosis regulating. The search resulted in 546 articles from which 9 articles were selected for analysis; ranging from serum levels of Bcl-2, Fas and tumor necrosis factor-related apoptosis-inducing ligand (TRAIL) measured by enzyme-linked immunosorbent assay and the levels of cellular expression of Bcl-2 and Bcl-xL the TCD4+ lymphocytes accessed by western blot. Most studies accessed either gene expression or polymorphism of Fas, FasL, and TRAIL in patients with HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP), whereas one study used flow cytometry and fluorescence to determine Fas expression. Increased Bcl-xL expression inhibited T lymphocyte apoptosis, whereas Bcl-2, serum levels, and cellular expression did not influence T lymphocyte apoptosis and serum levels of Fas were significantly higher and associated with markers of leukocyte activation in patients with HAM/TSP. In addition, Fas polymorphism (FAS-670AA) was associated with higher proviral load. There is a need for additional research on this issue since the number of patients was small and the studies presented higher heterogeneity.

Percepção subjetiva de esforço e recuperação da fadiga pós-sessão fisioterapêutica em pacientes com paraparesia espástica tropical / Subjective effort perception and fatigue recovery after physical therapy session in patients with tropical spastic paraparesis

Introdução: Vírus Linfotrópico de Células T Humana do Tipo-1 (HTLV-1) é um retrovírus que afeta os linfócitos T humano e desencadeia inflamação na medula, levando à paraparesia espástica tropical/mielopatia associada ao HTLV-1 (PET/MAH) com prejuízos funcionais. Tais disfunções podem influenciar nos efeitos da fisioterapia, gerando diferentes níveis de fadiga. Objetivo: Avaliar a percepção subjetiva de esforço e de recuperação de indivíduos com PET/MAH após sessão única de fisioterapia. Métodos: Incluíram-se 12 participantes sintomáticos para PET/MAH, de ambos os sexos, que foram submetidos uma vez ao protocolo fisioterapêutico. Os instrumentos avaliativos foram: Escala Modificada de Borg, Escala de Percepção Subjetiva de Recuperação (1º, 5º e 10º minuto após a sessão) e Escala de Incapacidade Neurológica do Instituto de Pesquisa Clínica Evandro Chagas ­ 2 (EIPEC). Resultados: Encontrou-se correlação moderada entre idade e taxa de percepção subjetiva de recuperação ao 1º (r = - 0,4923) e 5º (r = - 0,4913) minuto e entre índice do EIPEC-2 e taxa de percepção subjetiva de recuperação ao 1º (r = 0,3592) e 5º (r = - 0,3772) minuto. Conclusão: Indivíduos deste estudo com maior idade e grau de incapacidade neurológica têm menor percepção subjetiva de recuperação. (AU)

Introduction: Human T-Cell Lymphotropic Virus Type-1 (HTLV-1) is a retrovirus that affects human T lymphocytes and triggers inflammation in the spinal cord, leading to tropical spastic paraparesis / HTLV-1 associated myelopathy (TSP/HAM) with functional impairments. Such dysfunctions can influence the effects of physical therapy, generating different levels of fatigue. Objective: To evaluate the subjective perception of effort and recovery of individuals with TSP/HAM after a single session of physical therapy. Methods: 12 symptomatic participants for TSP/HAM, of both sexes, who were submitted once to a physiotherapeutic protocol were included. The evaluative instruments were: Modified Borg Scale, Scale of Subjective Perception of Recovery (1st, 5th and 10th minute after the session) and Scale of Neurological Disability at the Evandro Chagas Clinical Research Institute - 2 (EIPEC). Results: A moderate correlation was found between age and subjective perception rate of recovery at the 1st (r = - 0.4923) and 5th (r = - 0.4913) minute and between the EIPEC-2 index and the subjective perception rate of recovery at the 1st (r = 0.3592) and 5th (r = - 0.3772) minute. Conclusion: Individuals in this study with older age and degree of neurological disability have less subjective perception of recovery. (AU)

Spasticity distribution and severity in individuals with HTLV-1-associated myelopathy/tropical spastic paraparesis.

In individuals with HTLV-I-associated myelopathy/tropical spastic paraparesis (HAM/TSP), spasticity is one of the main symptoms. The neurological signs of the disease are well defined, but details of how spasticity appears in these individuals have not been well explored. To describe spasticity location and severity of HAM/TSP individuals. Cross-sectional study with individuals older than 18 years, diagnosed with HAM/TSP and with lower limb spasticity. Pregnant women, individuals with other associated neurological diseases, and those using antispastic drugs were not included. Spasticity was assessed by the Modified Ashworth Scale (MAS), applied to the abductor, adductor, flexor, and extensor muscles of the hips, flexors, and extensors of the knees, dorsiflexors, plantiflexors, evertors, and inverters of the foot. Thirty participants were included. The plantiflexor muscles (90%), knee extensors (80%), knee flexors (63,3%), and adductors (50%) were most frequently affected by spasticity. Twenty-three (76.7%) individuals had mixed spasticity, 5 (16.7%) with distal spasticity and 2 (6.7%) with proximal spasticity. MAS was similar between the lower limbs in at least 6 of the 10 muscle groups of each individual. Spasticity was mostly mixed in the lower limbs, with more frequently mild severity. The individuals were partially symmetrical between the lower limbs. The most affected muscle groups were the plantiflexors, knee extensors and flexors and the hip adductors, consecutively, being predominantly symmetrical.

Therapeutic effects of virtual reality video gaming on functional mobility, balance, and gait speed in individuals with tropical spastic paraparesis: A randomized crossover clinical trial

Abstract INTRODUCTION: Individuals with human T-cell lymphotropic virus 1-associated myelopathy/tropical spastic paraparesis (HAM/TSP) experience sensorimotor alterations, which can affect functional performance. Virtual reality (VR) videogaming is a therapeutic option, though there is scarce evidence for its use in this population. We aimed to investigate the therapeutic effects of a VR video game on functional mobility, balance, and gait speed in individuals with HAM/TSP. METHODS: We conducted a blinded, crossover clinical trial comprising 29 individuals with HAM/TSP and randomized them into two groups: (1) early therapy: rehabilitative protocol started immediately after the initial evaluation and (2) late therapy: rehabilitative protocol started 10 weeks later. We assessed all participants for balance using the Berg Balance Scale (BBS) scores, functional mobility using the Timed Up and Go (TUG) test, and gait speed using video camera and CvMob software. Differences were considered significant if p<0.05. RESULTS: The early therapy group individuals presented with higher BBS scores (p=0.415), less TUG times (p=0.290), and greater gait speed (p=0.296) than the late therapy group individuals. CONCLUSIONS: VR videogaming is a useful option for rehabilitative therapy in individuals with HAM/TSP; it positively affects balance, functional mobility, and gait speed.

Infección por virus HTLV-1/2 confirmada por serología y detección de provirus en pacientes ecuatorianos de paraparesis espástica tropical / HTLV-1/2 virus infection confirmed by serology and provirus DNA detection in tropical spastic paraparesis Ecuadorian patients

Introduccion: La infección con el virus linfotrópico de células T humano (HTLV) de tipo 1 y 2 es endémica en América del Sur. Existen muy pocos reportes clínicos de este retrovirus en pacientes de Ecuador y nunca confirmaron la presencia del virus con el aislamiento o la detección de su ADN. Esta infección se encuentra desatendida por las autoridades de salud pública, sin que existan estudios epidemiológicos de prevalencia a nivel del país. Objetivos: Este estudio tiene como objetivo la detección de infección por HTLV -1/2 en individuos sintomáticos de paraparesis espástica tropical (TSP) utilizando por primera vez en Ecuador diagnóstico serológico y la detección del provirus por biología molecular. Diseño del estudio. Se tomaron muestras de nueve pacientes con un diagnóstico de mielopatía y sospechoso de TSP, que fueron analizadas para la detección del virus HTLV-1/2 usando tres metodologías: ELISA comercial, ensayo de inmunofluorescencia indirecta (IF) y PCR anidada. Resultados: Cinco de los 9 (55.5%) pacientes fueron positivos tanto para la prueba de ELISA como para IF y PCR anidada. Conclusión: La alta prevalencia de infección por HTLV-1/2 entre individuos sintomáticos de mielopatía muestra la endemicidad de este retrovirus en Ecuador, la asociación de HTLV-1/2 con TSP y la necesidad de implementar estrategias de control y prevención para evitar la diseminación de esta enfermedad infecciosa desatendida.

Background: Infection with the Human T-cell lymphotropic virus (HTLV) type 1 and 2 is endemic in South America. There are only a few clinical reports of this retrovirus in patients in Ecuador, without employing virus-isolation methods or viral DNA detection. The infection is usually neglected in health care settings and by public health authorities and no country wide prevalence data are available. Objectives: This study aims to detect the HTLV-1/2 infection in symptomatic individuals for tropical spastic paraparesis (TSP) using for the first time in Ecuador both immunological and molecular biology methodologies. Study Design: Blood samples of 9 symptomatic individuals with myelopathy were analyzed for the detection of the HTLV-1/2 virus with three methods: ELISA, an indirect immunofluorescence (IF) assay and a nested-PCR. Results: Five out of 9 (55.5%) myelopathy patients were positive for ELISA, IF and nested- HTLV-1/2 PCR. Conclusion. The high prevalence of HTLV-1/2 infection among myelopathy patients shows the endemicity of this retrovirus in Ecuador, the association of HTLV-1/2 infection with TSP and the need of the implementation of control and prevention interventions to overcome the further dissemination of this neglected infectious disease.

Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy.

BACKGROUND: Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world's population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM/TSP), affects the nervous system. It causes sensorimotor losses, spasticity, muscle weakness, voiding and sexual dysfunction, pain, and balance disorders. There is limited knowledge of the feelings, experiences, and coping mechanisms associated with this neglected disease. The objective of the present qualitative study was to investigate the signs, meanings, and practices of people with HAM/TSP, through narratives obtained from focus groups and individual semi-structured face-to-face interviews. RESULTS: Thirty-eight individuals diagnosed with HAM/TSP participated in the study. The following categories and subcategories emerged from the participants: Signs-physical signs, symptoms, and discovery of the disease; Meanings-reaction to diagnosis and knowledge of disease, fears, and expectations; Practices-daily life, leisure, religious, and treatment activities. CONCLUSIONS: People with HAM/TSP suffer from symptoms that limit their social participation, and they are affected by complex and multidimensional feelings. This awareness can contribute to the implementation of public policies-focused on the real perspective of these patients-that provide more directed, empathic, and harmonious care for these individuals.

The effect of home exercise on the posture and mobility of people with HAM/TSP: a randomized clinical trial / Efeitos de exercícios domiciliares sobre a postura e mobilidade de pessoas com HAM/TSP: ensaio clínico randomizado

Abstract Background: Physical therapy has positive results in people with tropical spastic paraparesis (TSP). However, mobility and distance from rehabilitation centers limit the participation in outpatient programs. Objective: To evaluate the impact of a home exercise program on the posture and functional mobility of people with TSP. Methods: A randomized controlled trial comparing three groups of people who performed guided exercises from a guidebook for six months: supervised (SG), unsupervised (WG), and control (CG). Primary outcomes: postural angles (SAPO®) and functional mobility (TUG). Secondary outcomes: gait parameters (CVMob®). Results: The protocol described in the guidebook improved postural angles and functional mobility. There were also positive gait parameter effects (p<0.05). SG presented better responses than WG did, but both were preferable to CG. Conclusion: Home exercises oriented by a guidebook may benefit posture, functional mobility and gait parameters in people with TSP, and physiotherapist supervision can ensure better results.

Resumo Introdução: A fisioterapia apresenta resultados positivos em pessoas com paraparesia espástica tropical (PET). Entretanto, a dificuldade de locomoção e a distância dos centros de reabilitação limitam a participação em programas ambulatoriais. Objetivo: Avaliar o impacto de um programa de exercícios domiciliares na postura e mobilidade funcional de pessoas com PET. Métodos: Um ensaio clínico randomizado comparou três grupos de pessoas que realizaram exercícios guiados por cartilha: com supervisão (GS), sem supervisão (GN) e controle (GC) durante seis meses. Desfechos primários: ângulos posturais (SAPO®) e mobilidade funcional (TUG). Desfechos secundários: parâmetros da marcha (CVMob®). Resultados: O protocolo descrito na cartilha melhorou os ângulos posturais e a mobilidade funcional. Os resultados também foram positivos para os parâmetros da marcha (p<0,05). O GS apresentou melhores respostas que o GN, porém ambos foram preferíveis ao GC. Conclusão: Exercícios domiciliares orientados por cartilha podem ser úteis para beneficiar a postura, mobilidade funcional e parâmetros de marcha em pessoas com PET, e a supervisão do fisioterapeuta possibilita garantir melhores resultados.

Balance assessment in HTLV-1 associated myelopathy or tropical spastic paraparesis

Abstract INTRODUCTION: A good rating of the device in people with HTLV-1 in this population is essential for accuracy in prescribing data (walking). Thus, this study aimed to analyze the counterpart assessment methods that are best suited to patients with human T-cell lymphotropic virus (HTLV)-1 associated myelopathy or tropical spastic paraparesis (HAM/TSP). METHODS: This cross-sectional study related stabilometric and kinematic variables of postural oscillations with Berg's balance scale (BBS) and Timed Up and Go (TUG) in subjects with HAM/TSP compared to asymptomatic subjects. To assess the posterior and lateral postural projection, baropodometry and the Footwork® system was used, and the CVMob system was applied to kinematic parameters. The means comparison tests and correlations were applied with an alpha of 5%. RESULTS: Thirty-nine subjects (predominantly female) made up the sample. There was an increase in barodopometric oscillations, in the total oscillation area (p = 0.004), in the anteroposterior oscillation in the left (p = 0.015) and right views (p = 0.036), and in the lateral oscillation (p = 0.039) in the HAM/TSP group. Moderate correlations were found between oscillation baropodometry and the angular variation of the ankle, as well as with the BBS in the three angles and the TUG for lateral oscillation (p = 0.406). CONCLUSIONS: Each method has advantages and disadvantages, including cost accuracy. The best resources available at no additional cost for outpatient to use are the kinematic evaluation using a simple smartphone camera and free analysis software, and the TUG.